Water is important.

You probably already knew that, but I was reminded yesterday how important it is.

I tried to do what my doctor suggested. I tried to drink only liquid thicker than water in order to avoid aggravating the friend in the roof of my mouth.  I lasted one day.  There is a limit to how much Ensure one can endure though and soup and milk have started to wear out their welcome too.  It felt impossible to replace the amount of water I drink - which is not small - with thicker fluids.
The longer I went without water, the grumpier I got and the harder it was to concentrate and the less energy/wherewithal I had to prepare other food and prep syringes and wash syringes and measure meds, etc.  By the time 7pm rolled around, I was a mess - climbing one set of stairs winded me, my heart was racing, I was experiencing complete blackouts that last tens of seconds and several other symptoms of mild dehydration.
Thankfully, Dave saw this was not going well and quickly put his MacGyver skills to good use, building a contraption that allows me to trickle water into the back of my mouth and down my throat, bypassing the need to swallow, assuming I move the syringe plunger VERY slowly.
I also have to give a big shout out to Casey who put me on to thickened liquids, which are exactly what they sound like.  Dave ran out after the kids were in bed and bought some thickener for me after she explained how it worked.
This morning, I spent an hour getting about 1 cup of fluid into me. The thickener worked a treat when added to fruit punch. I am very sensitive about textures, so I was skeptical, but when chilled, it is the same texture as a fruit cocktail or a slushy, if it were smooth. This in combination with Ensure and water made for a good start to the day.
As a result of the kind and creative souls in my life, today has been much better.  I can already say quite confidently that I feel more energized and can think clearly. I can move around the house without taking breaks to catch my breath or regain my vision.  I'm considering reading a book, which I couldn't do yesterday - I tried.
Next goal is using this new approach to get me to next Wednesday when I see the surgeon.

Using the water dribbling contraption while drying my hair.

Looking tired and puffy, but at least I've got good hair :P  *Ha*

A week and a day aka there's a hole in my bucket...err palate

So you know those times when things are going really well and you're waking like Leonardo DiCaprio in that meme...you know the one....and then something happens to take the wind right of your sails? That was today, friends.

Things were stellar yesterday morning - I could breathe FINALLY! I was drinking large quantities. The swelling had gone down significantly.  I still look like an extra from The Walking Dead, but there was definite progress.

Yesterday evening, I noticed something odd.  When I drank water, a tiny bit dribbled out of my nose.  This struck me as odd, but not emergent, so I decided I would call the surgeon's office this morning to get some feedback on it.  

This morning, the amount of fluid that was traveling between the two was slightly higher and it was starting to become uncomfortable.  I still wasn't worried, but made a point of calling as soon as the office opened.

After some backing and forthing, on the phone with the office, it was decided that I have a fistula in my palate.  That is to say, there's a hole where there oughtn't be.  It is likely quite small.  May even just be that a membrane, while healing, has become thinner than it ought to.  Either way, not something that should happen.  I expected when the nurse said that "the doctor will call you back and he may give you something for it", we were talking about a medication or an exercise.  What I was not expecting was the direction to not drink water or thin fluids for the next week and hope it heals itself because otherwise I will need more surgery to repair the hole.

To say I am crushed would be an understatement.  This feels like a giant setback to me.  I am going to do everything in my power to keep anything from permeating that hole/membrane this week, but I am also not feeling terribly hopeful about it.  Things don't just "fix themselves," in my experience.

I am concerned about hydration.  I drink a lot of water (see blog posts re: NDI) and kind of hate the Ensure, so I am not sure how this is going to go.

I'm also frustrated because this shouldn't have happened and likely wouldn't have happened if it weren't for some particularly rigid staff at the hospital and their "my way or the highway" philosophies around certain aspects of aftercare for this surgery, many of which contradicted the doctor's directions and those in the written documentation I received from the hospital.  I had begun drafting another post addressing this yesterday, which will be broadly about self-advocacy and readiness in patient care.  I will go into the reasons for my frustration more there, but for now let's just say there is some baggage attached to this bit of shitty news.

Here's an updated pic....I can almost smile and I almost have cheekbones again, guys!

Deja Vu....

So we are 6 days out from my last (both most recent and final...no matter what) jaw surgery.  This surgery only involved my top jaw (unlike the last, wherein they operated on both the top and bottom).  All that said, half the surgery does not equal half the recovery.
If I had to liken it to something, it might be to the intervals of a reward point program.  I haven't crossed the 1 million point threshold, where I get full-face Stay-Puft style swelling and mustard yellow bruising from my eye sockets to my underwire and pain that requires multiple narcotics.  I am, however, beyond the 500K point mark of my first surgery (having my pallet split), which included two black eyes and chipmunk cheeks. I'm hanging more around the 750K mark...bonuses at this level include a face the shape of Frankenstein's monster's, black, blue and yellow mottling where my freckles used to be and an overall look that suggests I should have gotten the license plate of the truck before it sped off.
All that said, I am improving each day, same as last time.  Yesterday, I was much puffier than I am today and on top of my regular meds, I took a dose of Dilaudid.  Today, I have stuck to my two scheduled pain killers/anti-inflammatories and have been able to tolerate the discomfort so far.  I stopped using heat/ice two days ago because, like last time, I started to find the significant increases/decreases of the 20 minutes on and off and then the time without either to be far more uncomfortable than just sticking with a moderate, but stable amount of swelling. I'm also finding myself able to eat more volume more regularly earlier in the process than last time, so perhaps I won't lose quite as much weight as last time.  Still pretty tired...sleeping a lot and resting even more.  A shuffle to the kitchen and back is enough to wind me, but hopefully as I eat more, I will become more energetic.
Overall, I feel pretty positive - I hope that things continue in this direction, but after last time, am prepared for regressions.  I found steps backward really difficult last time, so I am going to work at keeping my spirits up through them this time.
In case you are interested, some pics of the mug.

Messing around on my phone while I wait to be taken into surgery.

Post-surgery - Moved from recovery to my room, looking like  a hot mess.

Day 1 - All rigged up and looking a bit bitchy about the whole thing, but the ice and humidity made me much more comfortable than I would have been without.

Day 2 - Bits of bruising started to emerge.  Feeling tired...can you tell?

Day 2 - Flowers from Dr. Rinehart's office. A nice surprise.

Liquid diet is bullshit guys....

No really though....bullshit.

Day 3 - Ditched the humidity for a bit, but not long...not a lot of obvious difference between my appearance in these pics, but the difference in feeling over these days was significant. 

Day 4 - Finally escaping! Late in the day, but thrilled to be out all the same (can't you see the excitement in my face ;) ). 

Day 5 - A SHOWER! Not helping a lot, but I felt better at least.  Hanging out at mom's is much better than the hospital!

Day 6 - Blackie is *so happy* to finally be allowed up in the chair with me.
She acted so dejected over the last couple of days.

Day 6 - A field trip to Teacher Appreciation Day at Chapters.  Even just 1/2 an hour of shuffling around a bookstore at a sloth's speed was invigorating!

The Foggy Memories

I don't really remember much from my time in recovery. It waffles between darkness and shiny, bright, noisy images. I remember someone telling me they were going to take me to my room. I remember the ride to my room being incredibly uncomfortable - I don't remember anything specific, but I remember a general feeling of upset and discomfort and crying.
I remember that they'd barely gotten me parked in my room when I struggled to tell them that I was going to be sick. No one understood me, so my memory is of a small group of people (the man to the far left was tallish) looking entirely nonplussed by the fact that I am vomiting like crazy and obviously beside myself. After this, everything is dark for a while, but as I drift in and out, I notice my mom is in the room now.
My first remotely vivid memory isn't a great one either. A very kind nurse was in my room (I don't know if I called her or if she was just in doing rounds, which they did often). I told her that I needed to pee and she was going to take me to the washroom. She also offered me pain meds. I told her I'd like that, but balked immediately when she came back around the corner with a hefty needle. I asked if there is any other option and she figured out pretty quickly that it was the needle that was freaking me out. In the end, she and my mom talked me into the morphine (the contents of the hefty needle) because I was definitely feeling something and was concerned that, once the grogginess passes, it would turn out that that something was pain and I was unprepared.
The needle itself didn't hurt, to my surprise, but I felt every.single.drop. of the medication as it was pushed into my vein. Once medicated, the nurse was going to take me to the washroom. This didn't quite work out as planned. I tried to put my weight on my own legs, but ended up falling into the nurse. Just as she was trying to steady me, I got an overwhelming wave of nausea and was tearfully begging her and my mom to get me lying down again and get the bed pan in my hands. This operation was completed *just* in time. Despite my having consumed nothing for a total of twenty-four hours at this point, I threw up again and with gusto. To further add to my humiliation, I ended up using a bedpan for the remainder of the night because I couldn't get to the bathroom. I blamed the morphine and refused to take anymore - my theory was supported by the fact that by morning, I was able to shuffle, well-supported, to the bathroom and the nausea ceased entirely.
By the next morning, I was significantly less groggy and the healing process began.

Day 16 - Started Solids Today

Ahhh....we all go back to our roots at some point, eh? Just as has happened twice before in our household, someone made an attempt at eating solid food today. It just happens that this person is 5'6" tall, 120lbs and hasn't been in babyhood for a while ;)
The verdict: It wasn't worth the effort it required. And that is saying something since one of the two attempts was whipped potatoes with cheddar, sour cream and garlic. The (very runny) oatmeal went down alright and was enjoyable enough, but when it came time for my whipped potatoes, even with most of my elastics off, it was still way too difficult and made me really nervous. I've tossed the rest in the fridge to try again another day.

Day 14 - This shall go down in infamy as the day of the crank

Today is the first one since very early days that I would consider myself to be in pain. My jaw aches and I have a pretty solid headache as well. I can't seem to shake it.
Add to this the fact that I am quite tired (can't seem to get a decent sleep for the life of me and still seem to be catching up) and I will self-diagnose myself as being a bit of a crank-pot today.
Today's pics:

Day 13 - Clean Bill of Health

Well, I've been to see my surgeon and my orthodontist and both have been very pleased with my progress.
The surgeon said that all of the hardware was where he'd left it (apparently, it can shift post-surgery), all of the incisions are healing up nicely and that I am am "a superstar" at keeping my mouth clean. He wants to see me again in a month. I think I will ask for copies of my xrays when I see him next because they were really something else - both the difference in the before and after and the sheer amount of hardware they've used to make the changes.
The orthodontist visit today involved changing the top wire and showing me how to change the elastics. I am truly flabbergasted at the fact that I am supposed to take the elastics off to eat (still can't chew anything, but can eat soft food that is blended enough to be considered "pre-chewed") and brush. I told the assistant and ortho that I don't know how much of that I will be doing this week since I don't feel terribly comfortable, but who knows what tomorrow will bring.
As for my general, overall feeling, I am doing well. The swelling continues to decrease (you will see a difference between the pic from two days ago and today's pic). The bruising is all but gone. Overnight last night, I got back a who whack of feeling in underside of my chin and along my jaw bone. It was so significant that I noticed it immediately upon waking up. There is still a rather large swath in the center of my chin that is numb and my lower-lip is still mostly numb, but the feeling is returning much faster than I'd have expected.
Given my improvement and the good words from the docs, the in-laws are heading home tomorrow. I understand their draw. It is tough being away from your comfort zone. We will miss them, but it won't be long before Courtney and Spencer are here visiting and school starts and my course and Isabel's dance classes start. Time will fly and, before we know it, it will be Thanksgiving. Time flies when you're having fun :)
Today's pics:

Day 11 - Identity Crisis

I wondered if this would happen. I've wondered for months and now, I know the answer - yes, I am going to have an identity crisis after my surgery. However, I don't think it is playing out exactly as most would expect.
It isn't the actual face itself that is throwing me. I always knew that I didn't have a stereotypically pretty smile. That said, I was okay with it. I was comfortable in my own skin, wonky smile and all. The smile I pictured in my head was more reflective of my soul, I guess and perhaps "prettier" than my real one, so seeing the "pretty" smile in the mirror isn't even that shocking or troubling. I guess this is the smile I've always had on the inside.
The trouble comes in exactly the form that I knew it would - I can't seem to amalgamate what I've done to my face and my belief that we should not alter ourselves to fit society's standards.
It is well known among my family and friends that I didn't choose this surgery for the aesthetic improvements, but rather because my bite needed to be altered in order to be functional and remain so long-term. That said, not everyone knows that and it is beginning to seem that the aesthetic change is going to be so dramatic that it will overshadow everything else (because really, for those not using my mouth, it is the most significant outcome of this surgery). I am struggling to figure out how I am going to continue sending the message to my students and children that they love themselves as they are when I obviously (to an outsider) don't practice what I preach. I feel a bit like a sell-out, a fraud - I would *never* make this sort of change only to improve my looks, but if I brought that up every time someone commented on how great I look now, it would start to get the feeling of "the lady doth protest too much." I honestly don't know what to do anymore, but I can tell you with certainty that the sheen is starting to wear off this particular side-effect of having this surgery really quickly :(
Today's photos:

Day 9 - Home Sweet Home

Don't get me wrong, I am eternally grateful to my sister and to Jane & Moe for the use of their spaces and even to the Dartmouth General Hospital and especially to my mom for spending more than a week of her vacation this year caring for me. Seriously, she didn't have to and it means a ton to me that she did.
All that said, my friends, I cannot tell you how elated I am to be home. My bed is so comfortable....it might as well be made of marshmallows. My children are angelic and perfect (this will probably last until bed time ;) ), my pets are the most delightful, well-mannered animals on the face of the planet.....you get what I am saying. It is that wonderful feeling of returning to your comfort zone after a time out of it, sometimes, as in stressful situations, WAY out of it.
The kids' reactions were better than I expected actually. Orin had a look of immediate recognition when he saw me, but also a definite sense of hesitation. He toddled right over and kind of coyly, sweetly, quietly asked to be picked up. I put him in my lap and almost immediately, he leaned into me, looked up into my face and smiled. After about twenty minutes, he was running around, plopping in my lap instructing me on the names of all of my belongings and species of animals that we have (he now calls the dog "dog" rather than "cat", people....can I get a Hallelujah!). Isabel was out grocery shopping with her dad when I arrived, so when she came in, she smiled right away, walked over to me, wrapped her arms around my legs and strung this all together, "I won't jump on you, mom. I'll be gentle. I love you so much. I missed you." She's been a right little mum to me, bringing me her friends to comfort me, helping me pour soup, grabbing a face cloth to mop up soup that I got on my shirt. Truly, heartwarming.
As for me, I feel much the same as I did yesterday. This is the first day when I haven't felt that the swelling and feeling in my face haven't changed. The bruising is fading already, which surprised me. Otherwise, I am feeling pretty similar to yesterday. Hopefully, tomorrow will bring with it a little more energy and a little less puffiness in the chin....it just still feels...well...gigantic.
Oh! I tried one of the soups that I bought today....V8 Cream of Broccoli. It is good. It has more substance to it than I was expecting, so I may need to hold off on using the rest for about a week because I can't quite manage the small chunks of broccoli yet, but the taste was really good. I was pretty impressed.
Pics below were taken while resting in my own bed before supper :)

Day 8 - A field trip

I decided I wanted to get outside and do/see something today. I am getting energy back every day (even though my sleep is diminishing with the discomfort brought on by returning feeling) and wanted to do something today. So mom and Mike took me to a little boardwalk on the Riverview side of the Petitcodiac and then to the Victora Park Craft Fair. We had a lovely time and while, yes it was tiring, it was rewarding to get out for a bit.
We also made a point of hitting Walmart and Sobey's in our quest for variety in my menu choices. We picked up a fruit/veggie cocktail that claims to taste like strawberry/banana fruit punch and two kinds of soup. I'll review them when I try them.
I think the only other big news of the day is that I have successfully drunk from glasses all day today (meaning, not only did I consume it, I didn't wear any of it either!!) The swelling in my cheeks went down quite a bit again over night. The chin is still swollen and tingly, but it seems to be coming around gradually as well.
Before I go, let me tell you a fun story....about an itch you can scratch. Not your regular every day unscratchable itch though....nay nay. From what I gather, the feeling in my chin is coming back in layers, maybe from the outside working toward the outside layers of skin. Well, my chin is itchy, but no amount of scratching on the outside is relieving that itch. It is lost somewhere in limbodermis, irritating the crap out of me. So, those who are simply scrambling to reach the center of their back, consider yourselves lucky ;)
Below are the glamour shots...

Day 7 - The Rundown

The difference a couple of days can make is really quite amazing. I feel far better than I expected to at this point and would certainly never have guessed three days ago that I would feel this good today.
Don't get me wrong, I am still tender and stiff from swelling and bruising. I still tire pretty easily (considering my usual pace, I am running at about the pace of an 80-year old....lots of resting between activity) and I am still trying to get a grasp on how much I need to eat to keep my energy a little more regulated. But.....
I can hold my head up without tiring or increasing swelling and, as a matter of fact, it seems to feel better when I do that than when I lie down. I actually had a hard time sleeping last night because I couldn't get comfortable. I can walk around the apartment with relative ease and stand for a little longer than I could yesterday. I didn't take any pain meds yesterday until bedtime and, as per above, that didn't seem to help keep me comfortable, so I probably won't bother tonight. I am laughing and telling jokes and I've noticed a distinct, gradual change in my tone and type of posting on Facebook over the course of the last week, as I regain my energy and vigour. Our bodies are really quite amazing when you consider how quickly they can come back from something so traumatic (physically, that is).
As a side note, I am growing tired of chocolate instant breakfast and tomato soup, so I am opening the floor to suggestions. Items of note: I can't do yogurt. I am sorry. I just can't. I prefer chocolate to fruit flavours, but will be trying smoothies (made with milk and ice cream) once I get home to my blender. I *love* soup, so any soup (especially creamy ones), including ones that can be strained or have the bits blended are definite options.

Day 7 - The Rainbow Connection

I may not participate in extreme sports, but I am a champion in extreme bruising.

Pictures Days 1-6

Straight out of the OR, lookin' hot! :P

Day 1 - Methinks, I was feeling a little surly.

Day 2 - Hooray for the warm compress!

Day 3 - Sent home this afternoon.

Day 4 - I = tired (you can vaguely see the yellow bruising on my neck here)

Day 5 - Oh! There it is!! BAM!

Day 6 - The swelling has gone down enough that I can almost smile here...almost.

Day 3 - Ugh.

Well, I didn't expect this would be any sort of fun and I am not being disappointed.
The pain is minimal because, during the operation, there is work done on the nerves, so they turn off for a while, numbing the face to some degree. My feeling is gradually coming back, but given what I had done, one would expect a lot more pain. I am taking the lowest dose of Tylenol 3 recommended and that is mostly just to keep the bit of pain that is returning at bay so I can sleep.
The swelling, on the other hand, is plentiful and extreme. I was using ice to keep it under control for the first 30+ hours, at which time it was recommended that I change to warm compresses. This seems to be working out...the heat is reducing the swelling that is now there in short spurts, giving me brief windows of relief. However, as soon as I take the compress off either to warm it or eat or take meds or whatever, the swelling balloons right back up until, within a few minutes, my face feels like it may explode from the pressure. I have begun wondering if leaving the warm compress off in order to prevent the extreme changes in pressure may not be the better choice.
Other than that, I am doing my best to stay hydrated (drinking about 60ml of water per hour) and to eat bits here and there (had 40mls of instant breakfast at each breakfast and lunch today and am considering tomato soup for supper) and am taking all the meds they gave me on the suggested schedule (something that is hard for me, since I am not a medication-taker, as a rule).
I have been ordered to rest my jaw (so keep talking to a minimum). Verbal communication has been replaced with note-writing and the use of ASL (with which my mother and I are both minimally familiar, conveniently). I am trying to get lots of sleep - this sort of thing wipes you out, I've learned.